ME/CFS with POTS, arthritis and migraines, somewhat better with hydroxychloroquine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I have ME (unofficially diagnosed by rheumatologist but she couldn’t put it in my chart as it’s supposed to be handled by GPs now)
In context ↗ - At worst: Severe
I can do these things maybe once or twice a month, but that’s more than before, and it gives me something to look forward to (as opposed to just lying in bed unable to even lift my phone most days).
In context ↗ - Now: Somewhat better
I am better than I was before the surgery. I’m still moderate to severe in terms of ME
In context ↗ - Began after: COVID
it got significantly worse after what I believe was a Covid infection in Feb 2020 (came into contact with someone coming from Wuhan through work)
Read from 11 of their posts and comments; links to the 9 this page draws on
Summary
Stream 46184 fell ill in February 2020 after a work contact from Wuhan, developing POTS, arthritis and migraines. Hydroxychloroquine and zolmitriptan helped; quercetin with antihistamines eased suspected MCAS. Mounjaro later reduced pain and brain fog and bisoprolol slowed her heart. A hysterectomy for endometriosis cut her pain, but by 2026 she was still moderate to severe.
Ask Miruvor AI
What they tried
What they credit
Their words about each treatment
- antihistamines · Helped
the only thing I experienced improvement with was starting on higher doses of antihistamines as per MCAS treatment protocol
In context ↗ - Quercetin · Helped
Antihistamines barely made a change but adding Quercetin for me made a visible difference.
In context ↗ - Hydroxychloroquine · Helped a lot
Got diagnosed, started Hydroxychloroquine which helped immensely.
In context ↗ - Zolmitriptan · Helped
First thing that help me was Zolmitriptan.
In context ↗ - rest and pacing · Helped
What I would recommend - as you’re still in early stages - is rest and pacing.
In context ↗ - time · Helped
Third thing is time - a long, long time. And so much rest.
In context ↗ - electrolytes · Helped
electrolytes help a bit
In context ↗ - Mounjaro · Helped
My brain fog improved slightly (I started being able to read
In context ↗ - Bisopropol · Helped
in February I was prescribed Bisopropol for POTS and that caused further 5BPM drop.
In context ↗ - therapist · Helped
My therapist (who btw was very important for my health, she also had long Covid so she helped immensely
In context ↗ - hysterectomy and excision surgery · Helped a lot
Had a hysterectomy - massively reduced pain.
In context ↗
Approaches: GLP-1 drugs · H1 antihistamines · Other drugs and medicines · Supplements · Surgery & structural
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| February 2020 | COVID infection; developed POTS and arthritisI had a partner when I first got sick in Feb 2020 (met someone coming from Wuhan through work) ... my hands hurt too much to even lift a glass of water to my lipsIn context ↗ | Severe | |
| 2020 | medication started helping; took a remote jobI managed to get some medication in the meantime that started helping (Zolmitriptan for migraines, Hydroxychloroquine for arthritis) and found a new job ... Remote so I just about managedIn context ↗ | Mild | Hydroxychloroquine / Plaquenil |
| summer 2021 | baseline improved a bitSlowly my baseline improved a bit in summerIn context ↗ | Mild | |
| autumn 2021 | baseline dropped againIn autumn when my baseline dropped again - he made the 1.5h long trips to see meIn context ↗ | Moderate | |
| 2024 | really bad 1.5 years, mostly lying in bedpast 1.5 years have been really bad though ... as opposed to just lying in bed unable to even lift my phone most days | Severe | |
| 2025 | excision surgery and hysterectomy for endometriosisI had excision surgery and a hysterectomy a bit over a year ago ... I am better than I was before the surgeryIn context ↗ | Severe | |
| October 2025 | started Mounjaro; less pain and slightly less brain fogMy brain fog improved slightly (I started being able to read, it still comes and goes, but before that I couldn’t do it at all). My pains and aches improvedIn context ↗ | Severe | Tirzepatide (Mounjaro, Zepbound) |
| February 2026 | bisoprolol for POTS lowered standing heart ratein February I was prescribed Bisopropol for POTS and that caused further 5BPM dropIn context ↗ | Moderate | Bisoprolol (Concor) |
| September 2026 | still moderate to severe, can occasionally go out and cookI’m still moderate to severe in terms of ME, but I was actually able to do things like attending a neighbour’s bday party (with a nap after 1.5h)In context ↗ | Moderate |
Adverse events
- Tirzepatide (Mounjaro, Zepbound)“didn’t have any side effects others than occasional constipation that could also have been caused by bowel endometriosis” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I will PEM for at least a couple of days (or most likely a whole week)
In context ↗ - Brain fog
My brain fog improved slightly (I started being able to read, it still comes and goes, but before that I couldn’t do it at all)
In context ↗ - POTS & dysautonomia
I developed bad POTS and arthritis
In context ↗ - Mast cell (MCAS) & allergies
hence it verified my suspicion of MCAS which I had on the base of my symptoms
In context ↗ - Pain & fibromyalgia
Hydroxychloroquine for arthritis
In context ↗ - Headaches & migraine
Zolmitriptan for migraines
In context ↗ - Gut problems
didn’t have any side effects others than occasional constipation
In context ↗
Ask Miruvor AI
Similar stories
-
Long COVID fatigue and brain fog, somewhat better after LDN and metformin
After a COVID infection in 2022, Puffin 93772 was left with fatigue, brain fog, PEM and exercise intolerance that kept her working from home and resting most days. Paxlovid lifted symptoms for two weeks; she then slipped back down, though her baseline ended…
-
Bedbound with long COVID, now close to normal at times after rest and antihistamines
A Canadian teacher developed long COVID symptoms in 2021 after her second vaccine dose, which became far worse after a COVID infection in February 2022. She cycled through three remissions and relapses triggered by stress, viruses and antibiotics, and was…
-
Bedbound then housebound with long COVID, now nearly back to normal after tirzepatide
Dew 60812 caught COVID-19 in March 2020 and was bedbound about half a year, then housebound for roughly two years with severe fatigue, brain fog and light sensitivity. They credit time, rifaximin (Xifaxan) for SIBO and later microdosed tirzepatide (Zepbound)…
-
Not enough detail to draw a path
Long COVID unable to work at first, much better with rest and diet
Prairie 47922 was 40 when COVID-19 with pneumonia in November 2020 led to long COVID; for the first two to three months he could not work or function. He credited time, rest, an anti-inflammatory diet and supplements, and was about 90-98% better by late…